Five things to do while waiting for an autism evaluation

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Unfortunately it’s common for families to have to wait weeks to months for a diagnostic evaluation after a parent, doctor or teacher notices behaviors that indicate a child may have autism spectrum disorder (ASD).

How you can prepare while you wait for an ASD evaluation:

  1. Learn more about autism. Read about autism and develop a list of questions for the visit and prepare to take action if your child is diagnosed with ASD.
  2. Gather your child’s information. Build a folder with your child’s medical records and any previous developmental or behavioral evaluations they have received. Include your own notes on your child’s behavior, as you observe it in different places and with different people. It can also help to jot down some thoughts on what you consider to be your child’s strengths and weaknesses. Bring this folder of records and notes with you to the evaluation.
  3. Learn what to expect at the evaluation. Some evaluations are done by a team of specialists, others by a single provider. In general, a developmental pediatrician or psychologist is the best qualified to make a diagnosis. However with training, other medical providers can competently conduct the evaluation. It should involve direct interaction between the provider and your child.
    • This should include a structured, play-based assessment called the Autism Diagnostic Observation Schedule (ADOS). Your child may also complete one or more cognitive, or “thinking skill” tests. As a parent, you’ll be asked questions about your child’s behavior and development. In addition, you’ll probably fill out one or more “checklists.” It can feel like a lot of questions. Just remember that this information helps the professional make the most accurate and helpful diagnosis.
    • You should have a chance to meet with your child’s evaluation team to discuss the assessment and diagnosis. You should also receive their written report. In all, the evaluation will take at least several hours and more than one appointment to complete.
  4. Arrange support. The evaluation appointments can be exhausting. Help prepare your child but talking to them about what to expect. Bring a bag of their go-to preferred activities and even a snack and drink. Many parents also find the diagnosis process emotional and overwhelming. Rather than go it alone, consider inviting someone you trust to accompany you, help take notes on what was said and make sure your questions get answered. 
  5. Get the ball rolling on intervention services. Whether or not your child is diagnosed with autism, the evaluation may reveal developmental delays that would benefit from intervention services such speech, occupational and physical therapy. Your school district or state early intervention program provides such services free of charge to children who need them. However, your child must be evaluated for them separately. So don’t wait for the autism diagnosis to request such an evaluation. Call now. You should also check out the Autism Speaks Individualized Education Program (IEP) Guide to see how that process works should your child qualify for special education services.

If you need additional help before or after the evaluation, contact the Autism Speaks Autism Response Team. 

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.